Tuesday, 12 January 2016

Six years diagnosed with Ehlers Danlos Syndrome..


This week marks my sixth year anniversary of being diagnosed with, Ehlers Danlos Syndrome. A day that was filled with a varying yet odd balance of joy, sadness, fear, progression and the almighty optimism. A journey that took 6 years in itself. We were so grateful to finally get the diagnosis we had been praying for, for what seemed like a lifetime. A diagnosis is a strange thing. You build yourself up to ultimately and optimistically, become well again. You eagerly await for the day life can finally start to change, eclipsing the pain you live in and finally allowing your healths steady progress to begin. And whilst, life works in mysterious ways and those elements come into play in others ways when you are diagnosed with an illness like Ehlers Danlos Syndrome, six years has caused a lack of development in terms of my pain being under control. When that fails you are left feeling at a loss. Perhaps this lies in the fact that I am someone who lives with a rarely acknowledged and misunderstood incurable illness. I have sadly become more ill, live in more pain, have more symptoms, have become more depressed and anxious over life with an incurable illness and feel more frightened about my future. I am however grateful for the work behind the scenes, whether it feels obvious to us as patients at different intervals. It is happening, slowly but surely and that is something to seek comfort in. I am always a balance of thankful and frightened through every small hurdle within my overlapping illnesses. 

I will not dismiss what specialists and doctors have attempted to do for me, as well as so many other patients so far. Once you manage to get under the correct care, they do try and I am grateful for the short time I may spend with them in an appointment, even when it does not end well or does not always feel like enough time to alter a jenga piece, care plan. I now have doctors who listen, rather than dismiss. I have doctors who try, rather than pass me to another practitioner, telling me it is in my head. I have doctors who attempt to respect my views as an individual who lives in the pain the illness provides. Without them, I would still be the young girl walking into another appointment yearning for answers. The girl who thinks if she attempts certain obsessive compulsive rituals, a diagnosis would appear in her life. The girl who doubted her voice when it came to her health issues. Options have been attempted, new specialists have been seen, chronic pain programmes have been tackled, yet despite the efforts from everyone, you can feel like you go round in circles in terms of the pain than complexes and limits your life. 

Whilst your unexplained life of pain seems to align a little more and many questions are answered along the way regarding your symptoms that made no sense, something that does not make sense is why something like this has happened to you. It is a topic you return to whenever the going gets tough, which can seem like an everyday limbo when you live with a chronic illness. Whilst you try not to get sucked in to that endless vortex of over thinking, you sometimes can not odds it. I acknowledge that there are many terrible, terminal and life threatening illnesses in this world, but pain is pain. Pain breaks you, pain hurts you physically and mentally and pain can allow you to feel worthless in many walks of life. Pain does not discriminate, pain is not an easy quality to abide with throughout your life and nobody should have to wake up everyday and feel like a helpless prisoner, to chronic pain throughout their entire body. 

Being told that an illness is non life threatening does not take away an individuals suffering or pain levels. It does not make you any less entitled to grieve, cry or feel low in your circumstances. It does not stop your illness becoming a disability, causing you to become housebound or bed bound. It does not stop the fact that you need help with almost everything, despite not wanting to ask for it. It does not stop the fact you want to fight for change in your life and your health. All illnesses, when limiting the quality of an individuals life, should be treated and looked upon with the same attitude and respect. Pain is something no one can judge when it is lived on a chronic level. If consuming pain puts your life on pause, alters your dreams and lifestyle, causes you to take so much medication that you rattle when you walk, then in my eyes it's beyond the ease of ability to have a healthy quality of life. 

I know how lucky and fortunate I am, to have a diagnosis. However, I will not disregard how hard myself and my family had to fight for a doctor to listen. To connect the dots that made no sense and caused me to continuously search for the one doctor who could help me gain an understanding of an illness. Which is something many families of the past, present and future will encounter who may read this. It took six long years, filled with more sadness and setbacks than I would like to remember. It was a time of the unknown and whilst it can often still feel that way with an illness many do not understand how to treat, I know that I am no longer dismissed as a helpless case within these sporadic and random symptoms. Symptoms that make zero sense verbally or on paper, until you have lived a day with them. Symptoms that make you feel so frightened, that you dread their daily disruption.

 I have been shown that there are some understanding doctors who are trying to help improve our lives without the false hope of a cure. It might take an incredibly long time to battle through a maze to reach them and there might be times where you are at a loss when in their company, but there will come a time where you encounter a doctor who will try their best. They are human too and whilst we depend on them for our quality of life in chronic pain, they are honest in voicing that we can not be cured. I have been told many times that they are at a loss and sometimes have to discharge you from clinic because of this. That is a petrifying thought when living with an illness that is so hard to manage. Pain management is what they attempt to work on and it is tough. You hit countless brick walls, you take medications that your body will not absorb and benefit from. 

I am now fully dependant on my wheelchair and crutches if I am not bed ridden. I have had many overlapping illnesses diagnosed, have met new doctors, transitioned from a children's clinic to an adult clinic, lost a large amount of my mobility and with all of those transitions, I have lost a lot of myself. I try to adapt and accept it, but I accept it as someone who has become accustomed to a diagnosis. As someone who still wants the world, but is realising that life is not all roses despite being young. My body feels like it does not belong to me but to an illness, that has completely flipped my life upside since I was a little girl. It does so in ways which make me feel so much anger as a young women towards a situation I often have no input or control over. An illness that I try my absolute best to abide with, to not anger, to not cause myself more pain, but that does not seem to be a balance that is in my favour. And whilst I know others may have this a lot worse than myself, we should never dismiss our own chronic illness or pain when it is on a scale that continues to put our lives on hold. An illness that leaves us bed bound and housebound for the majority of our existence. Missing out on many things that this short life can offer us. 

I have been ill for over half of my life and at 21, that is not something I take lightly. It is actually something that can infuriate me and make my future seem hopeless, yet that takes up more energy than acceptance. I have gained other viewpoints and perspectives that I would not have discovered without illness, I have looked for the positives and optimism when I can, yet I am still entitled to a life that illness tends to limit in many ways. As are so many in similar circumstances. This is something that I want to raise awareness and highlight, because I know am not alone in chronic illnesses devastating and disruptive pattern of making you think you are less entitled than others.

Everyone who lives with a chronic or long term illness dreams for a quantity of respite and a quality of life, in some form. A form good enough to count it as a life, not just a life consisting of a disabling illness where you feel miserable within your circumstances. It is OK to wish for and want that to appear, in your life. It proves you want better for yourself, that you really don't want to be an illness and live with constant limitations. Whilst I still find it unbelievable that I have been lumbered with an incurable illness, that disables me in ways I could not of dreamed of at a young age, I know I have no choice but to adapt and try my hardest to get on with it when forms of treatment are absent for the time being. As mundane as that feels, it is the only choice you are left with when given an incurable diagnosis. This has been my life from a young age and that thought in question is incredibly daunting. So daunting that I am reminded of it's presence daily. Whilst pain always causes daily intervention and you wish there was a mediator balance to hand more often, you can only try your best to succeed what you set out to do. I try to just take it day by day. 

Many specialists still openly admit they are continuously learning the ropes as quickly as possible when it comes to Ehlers Danlos Syndrome and it's form of management and treatment for each part of the body. You have to also take into account each individual and incredibly different patient, where patience is a virtue. The years I have been diagnosed feel like lifetimes, yet we learn from our doctors input, we become more intuitive with our bodies and pain, we become more assertive when speaking about our care and we continue to fight the life we have been given. Whilst my disability has become a lot worse, what I have seen in six years is awareness levels rise. Something that fills me with relief, joy and spurs me on to also continue raising awareness in my own ways. It is the puzzle piece that connects us to the public. It is awareness that many of us bank on in terms of outsiders knowing that this illness exists and that it can swiftly lead to debilitation, despite us looking healthy. Instead of the usual answer we resort to which is usually 'its very complicated', which can lead us feeling like we have to convince others that it exists. When I don't feel awareness is reported in the correct form, it fills me with dread because it's gives the public room to judge when not voiced or implied correctly. Awareness is something I endless lean towards when I need to relate to someone's lifestyle. It often gets me through my day. 

Six years passed, without much positive health progression can feel disheartening is some forms. Only in hindsight can you analyse how different parts of you life have either progressed or suffered as a result of an incurable diagnosis. With sadness comes joy and vice versa, we always need both to appreciate life and it's twists and turns. Like many of the undiagnosed, I still have that dread feeling when a hospital letter lands on the door mat, as well as the panic attacks before hospital appointments. I still never want to go to the appointment because I know my body is immune to most medications. I still feel like a helpless medical case when treatment backfires continuously. None of those aspects become any easier in the sense of having a diagnosis, but you are still grateful you have a medical title. That is often what drags you through when medicine or treatment does not. Despite the quality of care an individual may be fortunate to receive, the worry still exists in large sums. It is still incredibly daunting and it still leaves you feeling apprehensive and incredibly down. I despise having to visit pain clinics, the hours of travel time to see the selective few who know of this illness. I find myself loathing that this has been my life for so long whilst feeling fear, in the lack of progression the elder I become. Nevertheless, there is always someone worse and it is important to keep that perspective.  Life with poor health and disability is difficult, but others do currently have it much worse in ways of taking their last breath here on earth. Last but not least, there is always someone else going through something similar to you, there is someone who feels the anguish like you do and there will always be at least one person, who supports you. 


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